Keytruda–mouth hurts

I don’t know what you mean by sores so I will tell you my experience. I had WLE surgery and SLNB. before surgery anestheologists asked about me teeth and mouth without explaining why they were interested. Come to find out there can be a lot of trauma as they intubate you. So after these surgeries I had mouth soreness. Not that of a wound or blister but of the mechanical workings.

I also noted for a few weeks at least I was sleeping differently. Again come to find out that was the after affects of anesthesia I would not sleep strait thru and I would sleep very hard in fits and starts.. I think in fact I would go into a deep sleep and GRIND my teeth and chew on my lips.. I have never done that before. This went on for about a month. My dentist examined me and said given mouth soreness and lip abrasions I may have been grinding my teeth. I even got a mouth guard. It went away after a few weeks.

Now directly to your problem. For what ever reason, on my first and so far only infusion of opvidio, I think I had one of those brief hard sleeps. My guess is that I have inherent stress and being in that clinical setting caused a sleep reaction. The next day my mouth was sore. Again mechanical sorness not blisters. I even complained to my navigator. She wasn’t that helpful but he pain went away by the next day.

Dry mouth and tenderness to the oral mucosa is fairly common with immunotherapy. The GI tract is just a long tube. So given the fact that colitis is a side effect – oral irritation makes sense. The degree to which folks are affected varies person to person (obviously) with some not ever bothered at all. So, I would suspect that is what you are dealing with. I experienced it with nivo from my first infusion forward going on to develop significant mouth ulcers that I dealt with for years. Before I developed obvious ulcers, I called it ‘oral road rash’ because that’s what it felt like. I have no real solution – as I tried EVERYTHING!!! Probably at the stage I suspect you are, with no obvious lesions (and I don’t think you are necessarily going to develop them) – counter-intuitively drinks like lemonade felt good. Warm salt water to rinse and spit with can be comforting. I tired things like magic mouthwash homemade and via scrip – you can make your own with equal parts benadryl liquid and maalox that you swish and spit several times daily. (Via scrip it also contains lidocaine for numbing.) At a certain point I tried lidocaine lolly pops, but they gave me heart palpitations so that was a no! HA! Be sure to maintain good oral care. Baking soda or NON minty toothpaste like one from TOM’s on a soft brush helps. There are quite a few threads on the topic on this forum that come up on the search button. Hope this helps you find some relief. Celeste

Hi Tsvetochka,

Yes! I experienced something on nivo that sounds very similar to what you’re describing–oral mucositis. It hurt to brush my teeth with toothpaste, eat anything remotely spicy or acidic, and so on. I did develop one or two sores, but most of the time–like you’re describing–it was just the burning and sensitivity.

I was sent to my dermatologist at MSK (Dr. Mario Lacouture) and he prescribed a dexamethasone rinse–a local steroid–which worked wonders to clear this up. (FYI, he co-prescribed an antifungal lozenge, clotrimazole, since the steroid can make you susceptible to thrush.)

This side effect came and went throughout my time on nivo, so I’d just keep the dexamethasone on hand and do several rinses a day whenever it would pop up.

I hope this helps!
– Tarlie

You may also try hydrogen peroxide 3% and dilute it one part hydrogen peroxide with two parts water so that you get a 1% solution. You can rinse for 30 sec to a minute making sure you spit the solution out and do not swallow. The solution will bubble which is normal and how it works. This is a mild antiseptic and speeds healing which should help in addition to using a soft toothbrush and gentle flossing of course. I would be careful with using topical anesthetics especially long term since they are easy to overdose and can cause heart palpitation issues. Also, all of those mouthwashes contain alcohol which is drying to the tissues and in itself can be an irritant.
Melanie